Oh thank you Peter – if it’s one thing I have learnt it’s that life is not to be wasted and if I go first I hope my husband seizes my departure to start afresh on new adventures – not in a better way (tho I really hope it will be for him) but just a different way…and when I say life is not to be wasted I mean ..unless you want to. Many many…[Read more]

So very sorry to read of your husbands passing. My thoughts are with you at this very sad time. x

So sorry to hear your news but am heartened that you will continue the fight to not let this disease destroy any more than it has already. Life is precious – do your husband proud and live life to the full – for the both of you.

Rebecca x

Hi Brian, I am nearly 3 years post SCT without maintenance and it reduced my lambda to single figures and I remain in normal range still – altho numbers have crept up but still within range. I was, however, 0.3% MRD pre and post SCT so no change there. My consultant says the length of my remission is due to the deepening of the response from the…[Read more]

Hi Dean, Yes am always puzzled a bit about the outpatient procedure in the US and hope in the UK it is only for those close by and who seem fantastically well. I seemed to have obs done every 4 hours for all my stay and would have scared the family like hell at home as I did not look or act well. I think in London there are some use of hotels near…[Read more]

Hi Peter..thank you. My concern for kidney is when I relapse etc 4 yrs ago I was at 5% then 16% and stuck at that for months and was told it was unlikely to rise – SCT’d at about 20 (2yrs 10 months ago) slowly climbed to 32 then stuck and last check was 37% and am hoping it’s not a blip but another slow climb!

Hi Dean, Yes information overload…[Read more]

Hi Peter, Yes I do believe it is how you react to treatment etc which has been good for me so far but am conscious, having read some recent posts on the beacon that only one mm clone is dominant at once and I do not think that was the translocations ones. On relapse the tricky translocation may then be the dominant and prove more difficult to…[Read more]

Hi Dean, thanks for that story..I like it! Altho my genetics are classified as high risk it is always just a predictor due to the individuality. However my translocation 14:16 is seen in many kidney damaged patients (my light chains were only 1000 but they really stuck the boot in )- so I may be easy to treat but it causes maximum damage to the…[Read more]

Hi there – Just to add to Peters response whilst I love the myeloma beacon as it soooo informative – and mm’ers there seem positively to degree standard in their knowledge of our “chosen” subject you must be cautious to relate their experiences to here in the UK. SCT is no longer the gold standard of treatment in the US and that is because they…[Read more]

Hi Dean, Yes the test was done at diagnosis then one after induction to see what was left and 100 days after SCT. I guess when they do it after induction there are probably still pointers to what the MRD comprises – mine were still there so guess they are the hardest to get rid of and the ones to take notice of. Over time they mutate anyway and…[Read more]

Hi there, You seem to have gained remission from velcade (I believe velcade is only offered to 8 cycles maxc I had the 8 cycles) and therefore, you can wait and be off treatment until you relapse or you can progress to SCT in the hope (but nothings guaranteed) for a deeper/longer remission. I was 51 yrs old. I was on velcade and dex only and this…[Read more]

Hi Paul I have lambda light chain. the normal range levels are kappa 3.3 -19.4 mg/ltr and lambda 5.71-26.3 mg/ltr so yes you are out of normal range. The ratio between kappa and lambda is the important figure and the normal ratio is 0.26 – 1.65 – out of this is abnormal and generally considered to indicate the MM is active. Light chains can…[Read more]

Hi Scott, great news and am sure with your allo you have plenty more remission free years ahead..it’s always nice to have updates as you often wonder how people are faring and it’s especially nice to hear good news. All good news greatfully received.

Rebecca

Hello Helen

So to hear of your problems. I do hope you’re feeling a good bit better. Have they blamed the ixazomib ?
It will be such a shame if it is found to cause problems because it saves having to attend a hospital so often for Velcade.

I’m at Wycombe Gen so as far as I understand it comes under the Thames Valley Network from the Churchill.…[Read more]

Hi Les

I’m reading your posts with much interest. I’m relapsing at the moment and have been told I might well be on the regime you are, Ixazomib, lenilidimide, and dex. I’ve had Revlimid before so I know what to expect from that, but I’m interested in how the ixaxomib affects you. There is a big but and that is my consultant seems very cost…[Read more]

Hi Andy

Nice to hear from you. It seems many of the old posters have gone elsewhere, as they don’t input here much any more. I hope you are keeping as well as possible.

I spoke to my consultant yesterday about stopping/reducing the Zometa. He said the reasons its given continually is that it interferes with the actual myeloma cells thus having…[Read more]

Hi Eve, Sorry about your news but am sure if anyone can get through this with sanity intact it will be you so I wish you well with it all and thank you for the update – it is always helpful to make us take a step back from “normality” and remember the bigger picture and nice to hear from old friends. Here’s hoping your new rollercoaster has more…[Read more]

Thanks Jan. Gosh 5 years on Zometa. With me at the start of my journey, I didn’t have any lesions so I was lucky. I do have a very painful lower back but they’ve told me it’s wear and tear. ie vertebral slip caused by slipped discs.

I have my appointment this afternoon so we’ll see what he says. I’d be happier having it 3 monthly but whether…[Read more]

Hi Stanley

Thanks for your input. Having read some of the myeloma beacon articles. I may see if my consultant would agree to 3 monthly infusions. I’ve seen that some medics say one thing and others say the opposite. I know my dentist says Zometa stays in your system for years, if so why continue if its not necessary.

Thanks again.

susie

Thanks a lot David. I’ll see what my consultant says but I do want to stop it. Apart from anything the thought of osteonecrosis gives me nightmares and I’ve become obsessive with mouthwashes.😀.

All the best